Late Stage Caregiving

(Adapted from the Savvy Caregiver Training Program designed to train family and professional caregivers in the basic knowledge, skills, and attitudes needed to handle the challenges of caring for a family member with Alzheimer’s disease and to be an effective caregiver. Since 2002, it has been designated as one of the approved dementia training programs of the Alzheimer’s disease Demonstration Grants to States (ADDGS) program, which is funded through the U.S. Administration on Aging)

What caregivers can expect in the Late stage of Young Onset Alzheimer’s

During this final, and most debilitating, phase, people can do very little independently. They will initiate few actions on their own, and their ability to accomplish even routine daily tasks will continue to decline.

They need direct help for beginning, and getting through, most activities. People in the Late State Alzheimer’s may, for example, need help getting out of bed or to the toilet. They may need help getting dressed or feeding themselves.

Safety is a big concern, and most everything they do will need to be watched. Their growing confusion may lead to unpredictable reactions. The work of caregiving does increase, and caregivers will benefit by reaching out for additional help from others.

A breakdown of normal mental functioning

Increasingly, people at this stage do things without a sense that there is a purpose to the action. They do not act with a plan in mind, but seem to follow whatever cues are presented at their moment. People may perform two or three steps in a sequence, and then get stuck or distracted. They can use objects, but may need reminders about what they are supposed to be doing with the object.

For example, you might direct a person at this level to brush their hair as part of morning grooming. After you hand the brush and give a direction, the person will likely begin to brush. Then any number of things may happen:

• The person might get stuck in one spot and brush it over and over.

• The person might begin to use the brush in some other way; for example, to scrub the wash basin.

• The person might become distracted, put down the brush, and move toward something else.

A spouse or caregiver trying to provide care on their own will be very busy. Because care at this stage becomes a full-time job, this Late stage is often the point when people with Alzheimer’s are placed in institutional settings.

Problems communicating with, and relating to, others

For sufferers at this level, the world around them is confusing, and may seem threatening. Increasingly, they may not know where they are or who others are. They may even no longer recognize family members. They can struggle to make themselves understood, with an inability to find the right words, or to put those words together in a meaningful way.

Emotionally, people at this stage will be sensitive to the feelings of others and will pick up impatience, frustration, or annoyance coming from their caregivers. Even if someone is simply helping them with a task, they may feel rushed because they are mentally moving so much slower than the other person.

Other behaviors you may expect:

• Restlessness. The affected person may seem to have a lot of energy. They may pace or want to walk a great deal.

• Anxiety. They may react to their own ongoing confusion by becoming fearful or anxious. They may be hesitant or uncertain, even about following your directions.

• Withdrawal. They may not understand something, or feel intimidated, so they pull back from taking part in tasks and activities.

• Misinterpretation/paranoia. They will only grasp the parts of the world that are in front of them. They may recognize that parts are missing, and not know what to make of this. This can lead to accusations that others (including you) are stealing things or plotting to do them harm.

• Striking out. This may be verbal or physical. People may misunderstand something and take it as a threat. They might feel overwhelmed and become defensive. Even frustration can produce a violent response. Since these reactions are unpredictable, they can be difficult to take for a caregiver who is simply trying to help them.

• Trouble sleeping. The person may not be able to fall asleep easily, or may have trouble falling asleep once awakened.

• Adverse effects. Many things can upset a person at this level. Over-stimulation, fatigue, physical illness or pain, changes in routine or in the environment, or excessive demands on limited abilities can all cause reactions.

Caregiving ideas and strategies

People in the Late stage of Alzheimer’s may seem in some ways to have reverted to infancy. Perhaps this is a good model to keep in mind, as an ongoing reserve of patience is required in both circumstances.

• Take full control. Because the person is so dependent, the day’s schedule should be simple and undemanding. For each part of the day, have a clear plan for your care activities and what you will want the person to do. But be prepared to scale down and reduce your expectations, based on your observations.

• Keep routines. If you have already begun routines, stick to them. If you haven’t, look at what you have been doing. It may be that you have established routines, but have not named them.

• Plan in some downtime. Passive involvement, such as listening to music, rocking in a porch rocking chair, or letting them watch you complete a task, may give both the patient and the caregiver a much-needed break.

• Actively manage the setting. The environment should be increasingly simple. Remove any distractions or potential hazards that you can. Put everything the person needs for their task nearby, and set them up in the order that they’ll be used.

• Manage all tasks. By gesture or word, you will have to help the person to begin each task. Watch them throughout. Provide cues and visual demonstrations for each step. Provide simple verbal feedback, such as ‘keep going,’ ‘that’s all,’ and ‘put it down now.’ If their attention wanders from a task, divert him/her back to the activity at hand. But prepared for it to happen again.

• Offer concrete, one-step directions. Don’t bother with trying to offer explanations. Communication should emphasize visual and tactile (touch) cues. Provide reassurance, and be sure the person doesn’t feel pressured. Know when to take a break.

• Decide when it’s over. Errors, completion, and quality are unimportant. A task or activity is good and useful only as long as the person is happily occupied with it. If the person becomes bored or frustrated with an activity that’s not absolutely necessary, don’t push. Let the person know that the task is done, and praise them for whatever part they completed.

• Assist directly. If something has to get done, like dressing, let the person try doing it without your help. But if the person is not cooperating in the task, or if it’s taking longer than you can bear, jump in. Sometimes the best thing is just to do the job yourself.

• Watch over everything. Safety and well-being will have to be watched carefully. Potentially dangerous items should be removed from the environment, and all daily activities will have to be monitored. This includes basic personal tasks like eating, bathing, using the bathroom, etc.

• Orient other people. Explain to family members and visitors how you’ve learned it’s best to interact with the person. Share with them some of these caregiving tips and strategies, and caution them not to expect too much.